Husband's last camping trip

Thursday, October 31, 2013

Happy Halloween. The apartment complex sent a monthly newsletter here last week. In the letter, they provided a sign you can put on your door knob if you want trick or treaters to come to your door. If you don't put this sign on your door knob, you won't have any trick or treaters knocking on your door. I thought this a great idea, because, I did not plan on buying any candy.

In taking the dog out for his morning walk, I noticed residents have already placed this sign on their doors. As I walked back to my door, it looked so bare and cold. The door with no sign hanging from the door knob screamed what my life is like now. Almost as if mocking me.

I have this sadness that won't go away. Such a heaviness in my chest this whole week. And now, my barren, cold door knob, with no sign hanging from it has only made it worse.

Husband is doing poorly. His awareness is fading. He is sitting in his chair now, head dropped, occasionally talking to someone, using his hands as he attempts to speak. He has been hallucinating all morning.

I am thinking of putting up a tree shortly after Thanksgiving. Just in case. I will have to get an artificial tree. I didn't want an artificial one, I wanted a real tree. But, now, with circumstances being what they are, I want him to see a Christmas tree. Real or not, I feel this need to get one up, fast.

While I am praying his journey is almost over, I don't want it to be in December. Please, not December. January. Yes, January would be better. Please God.

His voice is also fading. You can barely hear him. I have to really strain my ears to hear him. He doesn't know words, spins his hands while trying to remember a simple word.

The trees are mostly bare now. The leaves lay on the ground, once green and full of beauty. They are now brown and crisp. Crackling under my feet as I walk the dog.

I feel different now. Lonely in a way. Sad. Scared at what life will be like once husband is gone. Will I be OK? I know I will be a different person, for sure. Not the carefree person I used to be.

I look at life differently now. I look at death differently as well. When husband is hallucinating, he looks up and smiles the sweetest smile. I feel in my heart, he sees God, or, Angels, speaking to him. It's that smile, so pure and simple. It's hard to describe.

Monday, October 28, 2013

What is there to say now? This new Dr we saw today was good. Really good. I am concerned with the weight loss. Dr said to watch it closely, get him to drink some Ensure. Might help but might not she said.

I had taken husband's June MRI. She said she didn't need it. After she was done, she leaves the room and I am feeling very uncomfortable about this MRI I have on disc. I felt like she needed it to see where we are at.

The nurse comes in and I tell her how uncomfortable I am in the Dr not even interested in the MRI disc. The nurse says she will scan it into their computer and goes and gets the Dr. Dr K comes in and asks me to step out with her.

We go to the computer. She shows me the MRI results and then says, "Mrs Lucero, the reason I don't need this is because it is obvious your husband is grave. His illness is beyond help anymore. There is nothing anyone can do. You are doing a wonderful job in caring for him. I am so sorry you didn't understand. It's not that I don't care, but, look at his brain. It looks like cauliflower now."

I started to cry and she puts her arm around me and says, "Oh, I am so sorry. I feel so bad for you right now. I know, I wish I could give him a magic pill to help, but, there is nothing I can do. I am also sorry there are other Dr's out there who will prescribe a pill, just to keep you quiet. I am not that kind of Dr. Take your husband home, care for him the way you are doing now, make his last days, however long that is, filled with love."

She said she will follow him closely. We go in 1 month to check his weight, and she will see him every 3 months until the end. She also has put in a referral for a Primary Care Physician, who will then get us Home Health Care, or, Hospice.

So that's it, in a nutshell. I don't know what I expected, but, am glad I got him in to this Dr. She shoots straight from the hip and doesn't mess around. I feel as if I made the right choice in getting a new Dr here, in the Springs.

All I could think of when driving home was what she said about his brain. "Look at his brain, it looks like cauliflower."

I would look over at husband sitting beside me in the car. His head bobbed, he would look out the window, no recognition of nothing. Nothing.

Saturday, October 26, 2013

Boy, I have really been slacking in posts. So much has changed in just a month, it's hard to keep up. I guess Dr F was right when he said the last 6 months would be a rapid decline. He knows his stuff.

In June, Dr A told me 6 to 9 months. In September, Dr F said 6 months, give or take. Now, on Monday, this new Dr K will give me a timeline. I wonder what it will be?

Husband has been slipping in an alarming manner. The other night, he came out of the bedroom and stood, holding on to the walls, just staring ahead. Finally, I asked him if something was the matter. He looked over to where my voice was coming from and said, "Where am I going?"

His voice has become so soft, I can't hear him at times. Dr F told me that is one of the signs of the beginning of the end. How strange. His voice is like a whisper, mumbled and ever so soft. It reminds me of someone who is so exhausted, they talk softly right before they fall to sleep.

I am finding myself repeating things to him all day now. I can say something to him and in the next moment he will ask me again. His memory is completely destroyed now.

Eating dinner the other night, he began to tell me about his neighbor he had as a little boy. In that new soft voice, he told me how mean this neighbor was and how he didn't like kids playing in front of his home. Of course, I had heard the story before, but, I was amazed at how he could remember this neighbor, but, can't remember anything else.

At the end of this conversation, he hung his head and said, "And then, he died."

I also think it's time to put him in the wheelchair, doing away with the walker. His legs have become so stiff and his brain can't tell him to move the legs, making it scary for me. It will be hard, I know, but, being that I have to make these decisions, I feel comfortable about the chair.

Speaking of decisions, I often wonder who signed me up for this? I sure didn't.

I have been thinking of finding a new Church. I miss going. The other day, standing on my patio, a young man came from nowhere, walked by, hesitated, then turned towards me and said, "Would you like to come to Church?"

Stunned, I said, "Yes." He then handed me a brochure of a Church and walked away. I glanced at the brochure and looked up to thank him. He was nowhere in sight. Now, it was a matter of seconds that he had just handed me this brochure, there was no way he could've walked that fast to the parking lot. He was gone.

As I walked in the house, I got this warm, fuzzy feeling. It felt like God had put His arms around me, comforting me.

God did this. He sent a messenger to me. That "person" who handed me this brochure? He wasn't of this world.

Since then, every time I walk by that brochure, on my fridge with a magnet, I feel the love of God.

Wednesday, October 23, 2013

These days, well, they just seem to blend together. Because of husband, I do the same thing every day. Same time, same place. It helps with his confusion. Lately, I don't even think about doing it, it just happens. And usually at the same time as the day before. I sometimes feel like I'm on automatic pilot.

When we had gone to Denver last month for the first visit with the new Dr, I was told at the front desk that there may be a problem with our insurance. Of course, we had the visit anyway. Then, last week, I got a bill. Seems our insurance does not cover. Great. I played with the idea of just keeping this Dr, but, knew in the long run, I could not afford to self pay. What made me angry was, when I had called to make an appointment in June, while still in Albuquerque, I was told they accepted our insurance.

Back in the old days, before Alzheimer's, I would've fought tooth and nail and would've been wrapped up in anger. Now? What's the sense? What will it matter in 10 years?

I called a Neurological Clinic on Monday. Asked them if the Dr's were accepting new patients, did they accept our insurance and how soon could we get in. They were accepting new patients, they did accept our insurance and the first available appointment would be in April. 2014.

My heart sank. I then began to explain husband. His age. His disease. Family history. The rarity of it. New to the state. How, according to Dr F in Denver, husband in all probability, would not be here in April of 2014.

This girl, silent on the phone, finally spoke and said, "Can I call you back?" Within 20 minutes, she calls and says, "OK, we've got you down for Monday, at 11:30. Don't worry about bringing Medical Records, we'll get them. You will be seeing Dr K."

Thank you.

Husband is holding steady. When he wakes up in the morning, he is very confused and doesn't know where he is at. Once the day starts to roll, he finds his groove and does OK. By sunset, confusion starts again and he becomes agitated.

The other night, I found him in the closet. When I walked in and found him there, he looked at me as if I were a stranger. This is where my acting abilities come into play.

I make light of it, guide him back to his bed, assure him of who I am, cover him up, make a few jokes and soothe his head. He will let me guide him to bed, all the while, looking at me and frowning. Once I get him on the bed and cover him up, his eyes will dart all over the room and then back at me.

The last week or so, I have come into the bedroom and have found husband on his bed with his eyes rolling in the back of his head. I don't know if that's seizure activity or what. That rattles me to my core.

Yes, the days melt together into one, it seems. Every day is the same, yet, each day that goes by, husband drifts further and further away from me.

Sunday, October 20, 2013

Ha, I think I finally mastered posting pictures. I took this one of husband. He has had an OK morning. Of course, he doesn't look normal, but, just OK. It's his eyes that get me every time.

This is the face of Alzheimer's.

That vacant, hollow stare. This is what he looks like today. His face has become elongated. I often look at him and wonder what he is thinking, if he thinks at all.

A dear friend sent me a picture of husband in 1994. It was just after Jack was born and we were at their house for their little girls' 2nd birthday party. Now, that little girl is in her 2nd year of college and my Jack is in Germany. So much has changed since that picture was taken.

Husband has not had a few good days. Shocker. He has been difficult lately. I think that's the hardest part. I will pick out his clothes to wear and he will insist on wearing Levi's. Ever try dressing a grown man, with stiff legs and arms? Yeah. Also, with his Levi's comes a belt. Then, when he has to go to the bathroom, he doesn't remember how to unbuckle his belt, let alone undoing the snap on his pants and disaster. I then have to change his pants and diaper. It's a mess.

I put my foot down and told him I am going to get him pull up pants, making it easier for him and me. Not to mention the laundry! At first, he hesitated, so, I said, "I'm not asking permission, this is the way it's going to be". End of subject!

He has been sleeping a lot. Hallucinations continue. Throughout the day. They come and go. I have learned to ride with it. One minute, he's here, the next, he's talking to someone I can't see. It's absolutely mind blowing.

Settling in for the winter. Gearing up for the Holidays. After the Holidays, well, then I will start the countdown to the end.

Wednesday, October 16, 2013

Someone turned the heat off here in Colorado!! Oh my, it is cold. Snow is predicted. While out walking my dog yesterday, I stopped in the office to say hello to the ladies. As I walked in, they all said "hi" and I said, "Who turned off the heat here?" One of them laughed and said, "Welcome to Colorado." Welcome indeed.

I had a fire going all day and into the night yesterday. Was so cozy and warm in here. Love, love, love the fireplace. Tish stopped by and brought more firewood in from my patio and loaded it around the fireplace.

Tish and Jace bought a house. It's a custom build home, very nice. She took us to the model home they wanted last week. Before they made a final decision. I really like what they have chosen. I am so excited for them. Of course, it will be several months before they actually move in, (it has to be built), but, they have picked out their lot, so, the process has started. Tish is beyond excited and I love listening to her babble about the new home.

They will be a small distance from me once they move. Not close like they are now. But, I am happy for them and getting caught up in their excitement helps me get my mind off of husband.

On the home front, not much news. We're in what I've termed a Holding Pattern, kind of like flying. You never know when the turbulence will hit.

Today is bath day. Since getting stuck in the tub a few weeks ago, I use the bath seat now. Husband does not like it. He will mildly protest, I just pay him no mind and wash him up. Once I turn on the shower to rinse him off, he will turn his head up and say that it feels good. I always look closely at him when he does this. He will close his eyes and let out a big sigh. I often wonder, does he remember when he could shower himself? Funny what goes through my mind nowadays.

To re-cap: It's bitter cold outside. Tish and Jace will build a new home. And me? Why, I'm in a Holding Pattern!!

Monday, October 14, 2013

I'm doing a little better today. I have a lot to do and decisions to make, but, am feeling better about what I feel comfortable in doing to honor husband. I won't say much now, but, a plan is taking place, in my mind, and, I feel good about it.

I left husband home alone yesterday, but, took the dog and together, we went to Tish's house to do laundry. A few days before, Tish had taken my sheets, towels and rugs. She did those for me so I wouldn't have to be away from home for so long.

Because he falls so much, I didn't want to risk him falling on the way to the car. I felt it was more risky to have him attempt to walk (with his walker) to the car than to leave him home. These are just one of the many decisions I go through daily. Damned if I do, damned if I don't.

He was asleep when I left, and was sitting in the rocker recliner when I got home. He was fine. In his own world, but, I'm used to that, so, that part didn't surprise me.

He said he was hungry, so, I made an early dinner. He ate a good dinner, then, went to his bed.

He has been sleeping good throughout the night. That's a plus. He does talk, in his sleep. His hands will move as he talks to someone or something. It's more interesting than scary to me.

Husband does not like our bathroom. He will tell me that there are people in the bathroom and he always wants me to tell them to leave. I go into the bathroom, stand in the middle of the room and politely ask "the people" to leave. Sometimes, it works, other times, not so good. It's just the bathroom, bedroom, living room, dining room and kitchen are not an issue.

He also says he has to "go down" to the toilet. His mind is so demented now, that I fully believe his perception has been damaged. Or, he will ask me which toilet he should use. He thinks there are more than one. When I point out which one to use, he will say, "But, I have to go down there. Can I go down?" Trying to convince him he does not have to go down is useless. I go along with it. It's better that way.

I have decided to go all out this Christmas. Tree, trimmings and presents under the tree for him. I now know this will be his last and I want to make a memory for me. There will be pictures, laughter and singing of Christmas songs. I refuse to give in to this disease. Alzheimer's will not ruin what will be husband's last Christmas.

There will be presents galore under the tree. Cheap, dollar store, Walmart and Target presents. I am actually getting excited when I think about how wonderful my house will look. And smell, with a real Christmas tree.

For the first time in a few years, I am actually looking forward to the Holidays. I've come a long way from last year. One would think that I, knowing husband will not be here next year, would crumble and fall.

No, Alzheimer's will not be in charge this year. I'm the boss this year.

Sunday, October 13, 2013

What to do or what to say after yesterday's post. I, at times, feel so lost. I don't know which way to turn anymore.

I was told by the new Dr's and Hospice to start making final arrangements for husband. After calling father in law, he said he wants to be placed next to husband's mother after all. It didn't really upset me, as he paid for it when she died. It's his right to want to be placed next to her.

All I've thought about for the last several days is what the Dr advised me to do. Make final arrangements.

I don't know where to start. How does one go about making final arrangements? Especially when you've moved to a new city where you don't know anyone?

I never thought about final arrangements and what is involved. Just never crossed my mind. Now, however, it is on my mind constantly. I want to honor husband and do the right thing. I just don't know where to turn.

Do I place him in Albuquerque, or, here? Do I have him buried or cremated? Do I just spread his ashes in the mountains here? In Albuquerque?

Also, how much does this all cost? I have heard throughout the years that a funeral is a big expense. Something I surely don't have.

I suppose I should call around and get some ideas.

All this sounds so morbid, and I wouldn't blame any of you if you just clicked out of here fast. But, this is real life and what happens when you are slammed with the impending death of a spouse or loved one.

This is not fun and I want out of the game.

When I come here each morning, what you read comes straight from my heart and soul. I bare it all here, folks. I don't mince words, I tell it like it is. No cute pictures, no cute stories, no updates on what "Sally Sue" did in school.

I am wanting to find a Church here in the Springs. I miss it. I could use some Spiritual Guidance.

Saturday, October 12, 2013

So, I got my new charger today. Yay. After purchasing 2 wrong ones, (which the store clerks insisted would work) guess the 3rd time is the charm. Oh, so nice to be able to use my laptop again.

I also changed up the look of the blog. I felt it needed a face-lift. This morning, while enjoying my espresso on the patio, I saw some geese flying south. They looked so graceful, and then, looking for a new background, I found this one. Looks like geese to me!!

Husband is not good. In about 10 days, he has lapsed into an unknown territory known only to him. I find him staring into space, often talking to either himself or someone(?) other than me.

I put in a call to Dr F on Wednesday about the Home Health Care. The nurse called me back a few hours later and said Dr F said it is too late for Home Health Care, that he needs Hospice. He said he believes husband has about 6 months, give or take, and that Home Health Care is not a good fit. The nurse forwarded this information to Hospice here in the Springs.

Hospice came this morning. After assessing husband, she said that he is not ready for Hospice, close, but not just yet. Said it could be a matter of a few weeks or up to a month. Needless to say, I was not amused. She said to contact the local Alzheimer's Association and see what they could offer us, for now.

When will people recognize that Alzheimer's is a Disease resulting in death??? Why does husband have to meet a certain "criteria" when he can't even remember where the bathroom is?

Don't get me started.

I woke up at 6:30 AM and heard a beeping sound. At first I thought I was dreaming. Then, I heard it again. Looked over at husband's bed and he was not in it. I flew out of bed and ran into the living room. There I found husband riding his scooter chair. And of course, I asked that crazy question, "What are you doing?"

Husband told me he was riding a bus and that he needed to sit in his scooter chair.

But, he doesn't meet the "criteria" for Hospice. Um, OK.

I have had peaks and valley's the last few weeks. One minute, I'm good, the next, I find tears welling up in my eyes. I want to laugh, I want to go outside and feel the beautiful autumn air on my face. I want to look at the beauty of my surroundings with the changing of the leaves. I want to feel safe and secure. I want to be happy. I want a "normal" husband. I want to feel normal. Not just play pretend.

Wednesday, October 9, 2013

Well, still using the office computers. My new charger should be on it's way within a few days.

Husband is doing poorly. I woke up yesterday morning with him staring at me. I said good morning. He said, "Who are you?" Yeah, that was the way my day started.

I see him fading by the minute. I have had bouts of sudden depression or overwhelming sadness. It hits me out of the blue.

My brother came to visit on Sunday. He lives in Florida, but is in Denver for work. We sure had a nice visit. Husband did well during the visit. That was nice, seeing him. After he left, I asked husband if he had enjoyed himself. He smiled and nodded his head.

Still waiting on the Home Health Care. It's been two weeks, don't know what's going on or why we have waited so long. I sure could use the help. Husband's legs are getting stiffer and dressing and bathing is becoming quite a feat.

Last week, husband could not get out of the tub. I had to go to the office here and get one of the maintenance guys to lift him out of the tub. I bought him a shower seat, but, he has refused to use it. Since getting stuck in the tub, I told him that from now on, we were using the bath seat. Now, each time I bathe him, using the shower seat, he is quiet, but, does not fight me on it anymore.

The days are getting shorter, the nights longer. The holidays are upon us.

Monday, October 7, 2013

It has been awhile. So sorry. I have had a lot of trouble getting a new charger for my laptop. I now have been told that I have to order it from HP. Easier said than done when you can't even use your laptop. I am using the computer here at my apartment office. They have a media center and we are free to use the computers anytime we want. I need to order the charger.

Now, on to husband's Dr visit, two weeks ago!!
I must say, it was an experience. We were in the exam room for 4 1/2 hours. We had 3 different Dr's come in and examine husband. They told me that since Dr A had sent husband's history in June, they have been anxious to see him.

During the exams, each Dr would tell me what they had found. Each time was more grim than before.

To recap, husband is officially in the final stages. Dr H explained what his brain is doing now. He compared it to an embryo. He said an embryo has a primitive brain, a brain that cannot think, remember, see or recognize anything. In an Alzheimer patient, the brain becomes embryo-like, thus, the lack of ability to
perform even the simplicity of tasks.

Dr H also asked me if I had noticed a change in his facial features. I told him as a matter of fact , yes I had. He went on to explain that husband's brain is like an embryo, and if I had ever seen an ultrasound and how the unborn baby had an elongated face? Yes, I have seen an ultrasound and yes, a baby in the womb does in fact have that elongated face. Now, he goes on to say that husband has entered the danger stage. With the elongated face, his swallowing reflexes are now involved and this is where choking to death is at the highest. He asked me if husband chokes or coughs a lot. I told him yes, mostly at night. I told him I elevate his hospital bed at night, but it doesn't help much. Dr H nodded and said, "Well, you can do that, but, unfortunately, it won't help."

All 3 Dr's could not give me a timeline. They said that with the rarity of husband's disease, they really have nothing to go on, but what they have read or heard from another colleague. One Dr, Dr F, looked at me and said, "6 months? A year? I don't think a year, but, let's put that as a goal, shall we?"

All in all, with even the grim news, I got so much out of it. I left feeling loaded with knowledge and feeling that these Dr's really, really, cared about husband and myself.

Since this Dr visit, husband has taken a downward spiral. We've had seizures, falling episodes and just plain misery.

With all this heartache, I always want to find something, anything, to laugh about. Well, Friday night, husband was a handful. I'd pull his covers back for him to get in bed, he'd get in, and as soon a I left the room, he'd get back up and start digging in the closet. After about 2 hours of this, he finally fell asleep, poor guy was exhausted.

Husband always falls asleep with his glasses on. When I got to him to take his glasses off, I notice his glasses are on upside down. Oh, what a sight!! I sat on my bed and literally cracked up. Oh, it was so sad, pitiful in fact, but, so so funny.

Imagine, it's about 11:30, with husband sound asleep, glasses on upside down, and me, sitting on the side of the bed, laughing so hard tears are running down my face.

About Me

Please join me as I care for my husband who has been diagnosed with a terminal illness called
Early Onset Familial Alzheimer's Disease. A very rare form of Alzheimer's, inherited on his Mothers' side of the family. All other family members died by age 47. My husband is 46. Join me won't you, as I travel this road that will leave me a Widow. Laugh with me, cry with me.